Six Months Exactly

Exactly six months ago, I was admitted to a hospital for the first time in my life. Within a day, I had had my first MRI, had my first spinal tap, met my first neurologist, had nearly forty vials of blood drawn, and began two weeks of intensive diagnostic testing. I couldn't have imagined what would follow. And I honestly can't believe it's been six months.

For me, the hardest thing about all of this is continually waiting. Waiting for a treatment that works, waiting for a diagnosis that can be confirmed, and most of all, waiting to feel well again. Walking into my MRI last week and my doctor's appointment today, I knew that the hardest thing to bear would be no change, no news, no clues. And that is exactly what happened. We did come up with some new treatment ideas, but overall, I don't know anything more today than I did yesterday. Or last week. Or three months ago, really. I guess the great trial of my life right now is patience. I don't think I ever was very good with that one. Hopefully this will teach me a thing or two!

MRI RESULTS
My MRI was almost exactly the same. The primary lesion did appear slightly larger, but Dr. Okuda thinks that is due to positioning of my head in the MRI. So there is no new information. And my recent MS panel (spinal tap) was also inconclusive. I still test positive for oligoclonal bands, which occurs in only a handful of conditions, including MS and lymphoma, but the rest of the MS panel means nothing. It is all normal, which means it doesn't confirm anything and it doesn't rule anything out.

BIOPSY DISCUSSION
We did talk about the biopsy and Dr. Okuda reiterated how dangerous it would be. He said we may consider it again in a month, and we will definitely consider it if the lesion starts growing again. But he said even then, it will be a very difficult decision to make. He looked at me kind of sadly and said, "you are right handed, aren't you?" And then went on to explain how taking brain tissue out of the motor strip could severely weaken or paralyze muscles on my right side. He said we wouldn't touch the language center (which is good!) but that overall, where the majority of biopsies are unlikely to cause problems...this is not one of those cases. He said that we may get to the point where we need to take the chance, even despite the risks, but that it will be a really hard decision to make when the time comes.

WHAT ELSE COULD IT BE?
We asked Dr. Okuda what else this could be. He is very confident that there are really only three major suspects on the table. Tumefactive Multiple Sclerosis, Lymphoma, and a tumor of some kind. He said he still feels that Tumefactive MS is the most likely culprit, and that some of the things that make this seem like it's not MS could be directly related to the fact that it's Tumefactive MS, and not general MS. But he is very open about the fact that he may be wrong, and so we will continue to keep close to the MRIs, and if that lesion gives us any further reason to doubt, we will have to consider a biopsy to rule out lymphoma or a tumor.

THE PLAN

1. Continue monthly MRIs, watching to see if the lesion enhancement decreases (which would be good) or if the lesion grows (which would obviously be bad.)

2. Start on amantadine to hopefully help with my body/muscle weakness and extreme fatigue. This medication is often used in parkinson's patients, because it specifically targets neurological causes.

3. The Tysabri treatment is not approved by my insurance yet, so I am going to start on Avonex (a more standard MS treatment) in the meantime. That means I get to inject myself with Avonex shots (these are deep muscle shots) every week for a couple months or more. Everyone knows how I love needles! The nurses in my family are going to have to do this for me...if my life depended on it, I don't think I could give myself a shot like this!

4. We talked about the plan for treating acute relapses or new lesions in the future. I reacted so horribly to the steroids (twice!) that Dr. O says we will never use them on me again. He says that even though we didn't see any notable improvement with plasmapheresis before, that will probably be our first line of defense. Dr. Okuda says he has also considered the possibility of treating me with a chemotherapy, but said he goes back and forth about it. He said my case is a challenge because normally, MS patients and MS lesions respond very noticeably to steroids. He said that anybody else in my situation should be taking steroids every month, but with the steroids not working for me, it's almost like my lesions have gone untreated. I think this is something that Dr. O will continue to think about, but for now, the first line of defense in an acute situation will be plasmapheresis. (Hooray for shoving giant tubes in my jugular vein!)

That's all I can remember for now. I have to say I am disappointed that we don't have any further clues, and that the biopsy is too risky to look there for answers. But it definitely helps that Dr. Okuda seems to have a strong grasp of everything, and that he is confident in outlining a plan and backup plan. It really helps me to be able to focus more on recovering and getting well, knowing that he is so thoroughly watching things from a medical standpoint.

I want to sincerely thank everyone who has been praying for me, and calling on God to bless me in a variety of ways. Today was a rough day and it genuinely helped to know that there were so many people thinking about me and praying for me.

Spiritually, this has been an interesting learning process for me. This trial and the many unwanted changes in my life have been hard to bear. But surprisingly, I know more now than I ever have, that God has a plan for me. I know that even when I can't understand the reasons or the timing, that tests like this one will not last forever, and that through them, I will be taught to be a better person and a better follower of Jesus Christ. I know that he is more powerful than all of this. I know that he loves me. And even though a lack of answers feels like the worst possible answer, something about my current path feels right. Whether its actually the right path and treatment, or if its just the right timing of things moving forward, I don't know. But for now, I'll trust him and wait for whatever comes next.

love to all,
mandy
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"I Will Praise You In This Storm" by Casting Crowns